{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,24]],"date-time":"2026-01-24T17:00:47Z","timestamp":1769274047653,"version":"3.49.0"},"reference-count":11,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2022,1,7]],"date-time":"2022-01-07T00:00:00Z","timestamp":1641513600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2022,1,7]],"date-time":"2022-01-07T00:00:00Z","timestamp":1641513600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Med Res Methodol"],"published-print":{"date-parts":[[2022,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>The small sample sizes available within many very preterm (VPT) longitudinal birth cohort studies mean that it is often necessary to combine and harmonise data from individual studies to increase statistical power, especially for studying rare outcomes. Curating and mapping data is a vital first step in the process of data harmonisation. To facilitate data mapping and harmonisation across VPT birth cohort studies, we developed a custom classification system as part of the Research on European Children and Adults born Preterm (RECAP Preterm) project in order to increase the scope and generalisability of research and the evaluation of outcomes across the lifespan for individuals born VPT.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>The multidisciplinary consortium of expert clinicians and researchers who made up the RECAP Preterm project participated in a four-phase consultation process via email questionnaire to develop a topic-specific classification system. Descriptive analyses were calculated after each questionnaire round to provide pre- and post- ratings to assess levels of agreement with the classification system as it developed. Amendments and refinements were made to the classification system after each round.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Expert input from 23 clinicians and researchers from the RECAP Preterm project aided development of the classification system\u2019s topic content, refining it from 10 modules, 48 themes and 197 domains to 14 modules, 93 themes\u00a0and 345 domains. Supplementary classifications for target, source, mode and instrument were also developed to capture additional variable-level information. Over 22,000 individual data variables relating to VPT birth outcomes have been mapped to the classification system to date to facilitate data harmonisation. This will continue to increase as retrospective data items are mapped and harmonised variables are created.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>This bespoke preterm birth classification system is a fundamental component of the RECAP Preterm project\u2019s web-based interactive platform. It is freely available for use worldwide by those interested in research into the long term impact of VPT birth. It can also be used to inform the development of future cohort studies.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12874-021-01494-5","type":"journal-article","created":{"date-parts":[[2022,1,7]],"date-time":"2022-01-07T19:02:48Z","timestamp":1641582168000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Development of a data classification system for preterm birth cohort studies: the RECAP Preterm project"],"prefix":"10.1186","volume":"22","author":[{"given":"Deborah","family":"Bamber","sequence":"first","affiliation":[]},{"given":"Helen E.","family":"Collins","sequence":"additional","affiliation":[]},{"given":"Charlotte","family":"Powell","sequence":"additional","affiliation":[]},{"given":"Gon\u00e7alo Campos","family":"Gon\u00e7alves","sequence":"additional","affiliation":[]},{"given":"Samantha","family":"Johnson","sequence":"additional","affiliation":[]},{"given":"Bradley","family":"Manktelow","sequence":"additional","affiliation":[]},{"given":"Jos\u00e9 Pedro","family":"Ornelas","sequence":"additional","affiliation":[]},{"given":"Jo\u00e3o Correia","family":"Lopes","sequence":"additional","affiliation":[]},{"given":"Artur","family":"Rocha","sequence":"additional","affiliation":[]},{"given":"Elizabeth S.","family":"Draper","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2022,1,7]]},"reference":[{"key":"1494_CR1","unstructured":"Euro-Peristat Project. European perinatal health report. Core indicators of the health and care of pregnant women and babies in Europe in 2015, 2018. Available: http:\/\/ www.europeristat.com\/index.php\/reports\/european-perinatal-health-report-2015. htm (20th July 2020, date last accessed)."},{"key":"1494_CR2","doi-asserted-by":"publisher","first-page":"261","DOI":"10.1016\/S0140-6736(08)60136-1","volume":"371","author":"S Saigal","year":"2008","unstructured":"Saigal S, Doyle LW. An overview of mortality and sequelae of preterm birth from infancy to adulthood. Lancet. 2008;371:261\u20139.","journal-title":"Lancet"},{"key":"1494_CR3","doi-asserted-by":"publisher","first-page":"69","DOI":"10.1146\/annurev-devpsych-121318-084804","volume":"1","author":"D Wolke","year":"2019","unstructured":"Wolke D, Johnson S, Mendonca M. The life course consequences of very preterm birth. Ann Rev Dev Psychol. 2019;1:69\u201392.","journal-title":"Ann Rev Dev Psychol"},{"key":"1494_CR4","doi-asserted-by":"publisher","first-page":"97","DOI":"10.1136\/archdischild-2015-309581","volume":"102","author":"S Johnson","year":"2017","unstructured":"Johnson S, Marlow N. Early and long-term outcome of extremely preterm infants. Arch Dis Child. 2017;102:97\u2013102.","journal-title":"Arch Dis Child"},{"issue":"5","key":"1494_CR5","doi-asserted-by":"publisher","first-page":"1314","DOI":"10.1093\/ije\/dyr106","volume":"40","author":"I Fortier","year":"2011","unstructured":"Fortier I, Doiron D, Little J, et al. Is rigorous retrospective harmonization possible? Application of the DataSHaPER approach across 53 large studies. Int J Epidemiol. 2011;40(5):1314\u201328.","journal-title":"Int J Epidemiol"},{"key":"1494_CR6","unstructured":"World Health Organization. International classification of functioning, disability and health: ICF. World health. Organization. 2001. https:\/\/www.who.int\/standards\/classifications\/international-classification-of-functioning-disability-and-health."},{"key":"1494_CR7","unstructured":"World Health Organization, editor. ICD-10 : international statistical classification of diseases and related health problems : tenth revision. 2nd ed: World Health Organization; 2004.\u00a0https:\/\/apps.who.int\/iris\/handle\/10665\/42980."},{"key":"1494_CR8","unstructured":"National Cancer Institute Thesaurus v20.06e: https:\/\/ncit.nci.nih.gov\/"},{"key":"1494_CR9","unstructured":"World Health Organization. https:\/\/www.who.int\/classifications\/terminology\/en\/"},{"key":"1494_CR10","doi-asserted-by":"publisher","first-page":"1383","DOI":"10.1093\/ije\/dyq139","volume":"39","author":"I Fortier","year":"2010","unstructured":"Fortier I, Burton PR, Robson PJ, Ferretti V, Little J, L\u2019Heureux F, et al. Quality, quantity and harmony: the DataSHaPER approach to integrating data across bioclinical studies. 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Lancet Child Adolesc Health. 2019;3(10):705\u201312.","DOI":"10.1016\/S2352-4642(19)30189-0"}],"container-title":["BMC Medical Research Methodology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12874-021-01494-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12874-021-01494-5\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12874-021-01494-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,1,7]],"date-time":"2022-01-07T19:10:11Z","timestamp":1641582611000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcmedresmethodol.biomedcentral.com\/articles\/10.1186\/s12874-021-01494-5"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,1,7]]},"references-count":11,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2022,12]]}},"alternative-id":["1494"],"URL":"https:\/\/doi.org\/10.1186\/s12874-021-01494-5","relation":{},"ISSN":["1471-2288"],"issn-type":[{"value":"1471-2288","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,1,7]]},"assertion":[{"value":"3 August 2021","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"6 December 2021","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"7 January 2022","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"This paper describes a consultation process that we conducted with our partner members of the RECAP Preterm project study consortium to reach a consensus on the classification system to be used for the project as part of the scheduled work as specified in the funding application. Consent to participate was by signed agreement for all aspects of the study. The University of Leicester\u2019s Research Approval Pathway Flowchart and the UK\u2019s Health Research Authority decision tool () showed that ethics approval was not required for this activity. The study followed all relevant guidelines and regulations (Declaration of Helsinki). All participants were acknowledged in the study\u2019s output.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"the authors declare that they have no competing interests","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"8"}}